New Treatment

I've tried to write an update a few times over the last week or so, and for whatever reasons I haven't been able to get through it. So I'll try to include as much as has been going on since the most recent PET scan.

The biopsy of my lymph node was delayed about a week because all of the interventional radiologists at NIH were away for a conference the week after my PET scan. However, I went in on a Monday morning and had them draw some tissue from the lymph node under my armpit, and the waiting was on. The first news I got was from my Dad, who knows one of the pathologists at NIH. He let me know in the middle of that week that the samples were cancerous. So keeping the fingers crossed that the PET was incorrect didn't help.

The stains that were run on my tissue samples took a few days longer to be analyzed, so there wasn't any other major news that week. However, my doctors had switched me back to sirolimus because it is for immune suppression while also having anti-tumor effects. One of the side effects of sirolimus though is mouth sores, and my mouth and throat definitely flared up after starting back on sirolimus. So for the last week or so I've been having trouble swallowing and eating most foods, much like I had trouble with before starting on prednisone back in June.

Last week my parents and I met with my doctor. He shared that the biopsy results showed no CD20 markers, but an abundance of cells with CD25 and CD30 markers. What this means is that the plan to use Rituxan, the anti-CD20 antibody, is not an option. The good news regarding those other markers, is that there are drugs available for treating both of those as well. The anti-CD30 antibody is currently in trial through the company that is developing it. My doctor was confident that NIH would be able to gain access to it for my use, but the paperwork might take a while. the anti-CD25 treatment is called Ontak, and is readily available at NIH. Since my cancer has been pretty aggressive in the past, the recommendation was to start with Ontak now, and possibly keep the option of the CD30 treatment for the future. The pathology from my biopsy showed a high prevalence of both CD25 and CD30 markers, so they should both react well to whichever treatment was used.

Part of the Ontak drug is a toxin, diptheria, which will help kill the cancer cells after they are identified. The main side effect of this toxin involves capillary leaking. This is when fluid will leak out of the capillaries and cause swelling. The risk of this happening in the lungs could cause severe flu like symptoms. Another possible side effect of Ontak is loss of vision. These don't sound like much fun, but my doctor didn't seem overly worried about them. I asked about how this might compare to the chemotherapy I've had in the past, and he stated that he just couldn't say. Its possible that my body could handle it much better or possibly worse. So who knows. However, most things I've read show that most people only have mild or moderate side effects from Ontak.

Another benefit of Ontak is that it has successfully been used as a treatment for GVHD. Since my GVHD is still a big issue right now, it would be great to have the anti-cancer effects of this drug as well as some help with my GVHD symptoms. I certainly hope to have positive results on both fronts from this drug.

So this week I will try to get started on the Ontak protocol. My doctor said we can try to maneuver around my work schedule, and I am curious as to how that will work out. Ontak is administered over five consecutive days, and I wonder how much time in the hospital that will require for each of those visits. There are definitely a lot of details with this therapy that I don't have yet, but the plan seems good for now. Its possible that after Ontak, more treatment, such as a boost of donor cells or more chemotherapy might be used in order to really try and knock my cancer out. Those type of decisions will of course be decided later.

Less than a week from now will be the Light the Night Walk for Washington, DC. I'm very proud that the team I've set up is just 25.00 dollars away from the goal of 5,000 dollars that I set. Thanks to everybody who has given to this cause to help the Leukemia and Lymphoma Society. The longer I keep dealing with this disease, it makes me realize how important that events like this are held that allow organizations like this to assist patients and further research. http://pages.lightthenight.org/nca/WashDC09/JohnBlattnerHatesCancer

Nine Months Post Transplant

Today is nine months out from my bone marrow transplant and I was confident that I would be celebrating a positive result on my PET scan today. However, cancer sucks and it gave us another nasty little surprise. The doctor explained that there were two spots on the PET scan that looked like reoccurences of disease. One of those areas was the area where the main tumor has been located, although he stated that it wasn't a large mass like had been seen previously. The other area of concern is the left axial lymph node, which is located near the left armpit. This is an area where I haven't had any activity before as far as I know.

So its an immediate downer to hear that there has been some regrowth, but its positive to know that since I have been having these PET scans so frequently, that this growth is being caught quickly. Of course the next topic of conversation after what exactly is going on is what are we going to do. The doctor outlined some plans that I'll share about in a minute, but the first thing to be done is a needle biopsy of the lymph node. The pathology from that biopsy will hopefully give a good idea of what this latest growth looks like, and a clearer treatment plan can be outlined. Until the results of that biopsy are back though nothing will change.

The regrowth is probably a result of having to continue on immunosuppressants and adding prednisone in order to quell my chronic GVHD symptoms. I was getting great results on previous PET scans which can be attributed to the new immune system fighting the cancer cells. However, the GVHD symptoms were becoming too much to bear, especially the fact that it was impossible for me to swallow without severe pain. While my GVHD symptoms have improved since June, it appears that having to fight the GVHD has stopped the graft versus tumor effect which is key to eliminating all of the disease. Therefore the plan of treatment right now is to aggressively taper me off of the prednisone, while restarting me on one of my immunosuppressants, sirolimus. The doctor explained that sirolimus can have a tumor fighting effect, and I'll have to rely on it to minimalize flareups of the GVHD. I believe tacrolimus, the immunosuppressant I am on now, will be taken off when the sirolimus is reintroduced.

In addition to the changes in medicines relating to the GVHD, the current plan would be to start me on weekly rituxin infusions. Rituxan is a drug that I have taken before as part of my chemotherapy regimen. I didn't have any adverse reactions to it, so I'm not bummed about having to take it. The combination of sirolimus and rituxin, and the removal of prednisone would hopefully weaken the remaining cancer cells and boost my immune system enough to fight the cancer.

Another drug that might be introduced if the doctors don't see the desired response with just rituxin would be bortezomib, commercially known as Velcade. I'll go with vVelcade since its easier to say and spell. This drug is fairly new, having been approved by the FDA for use with multiple myeloma back in 2003. My doctor said that this could be a good drug for this situation since Velcade has immune boosting tendencies as well as anti-cancer effects.

Rituxin and Velcade are treatments that are closer on the horizon. Other options such as more chemotherapy, a booster dose of donor stem cells, and some gene therapy treatment that NIH is expecting to begin in the next year are options that could be needed down the line. The boost of donor stem cells wouldn't be a great option right now since the active GVHD that I have would likely get a lot worse with new cells introduced to the body. A more severe GVHD certainly wouldn't be fun to deal with, so the less harmful treatment options will be pursued first, and hopefully my GVHD will start to run its course on its own.

So thats the disappointing news right now. Its certainly not good news, but I don't feel like its the worst my family or I have had to deal with over the last two years. It was mid-September two years ago when I was first diagnosed with lymphoma, so September is really becoming one of my least favorite months. However, after getting the news yesterday I was back at work today, and I'll be heading up to New York to visit Kate's family this weekend. So I'm not making any changes to life quite yet. This news might cause some adjustments to be made sometime in the future, but for right now I'm going to continue living life as normal.

Part of living that normal life involves the Leukemia & Lymphoma Society's Light the Night walk a month from today on October 17th. The team I've set up has raised over 2,000 dollars towards our goal of 5,000. I'm definitely impressed and happy about that number so far! Anybody who wants to join us for the walk or who would like to donate to help the Leukemia & Lymphoma Society are definitely welcome.http://pages.lightthenight.org/nca/WashDC09/JohnBlattnerHatesCancer

I definitely want to say thanks to my family and everybody else who has shown their support by donating so far. I'll be sure to keep people updated with whats going on with my journey. Thanks again to everybody who has been sending out their prayers and positive thoughts!